Tuesday (Change of plans)

In an effort to get us home sooner and because we feel we are loosing the diuretic battle, Joshua will go in for surgery today. He will go to IR (Interventional Radiology) and have a drain placed to get the fluid out of the area surrounding his lungs. He will go in about 2:30 pm and hopefully be out in about an hour or so. Please pray that all goes well and that the fluid is in place that they can safely tap into it and remove it. The hope is that we can remove the drain in a couple days and prepare to get home. I seem to be a little more antsy this time as Trevor's Birthday is Monday and I REALLY REALLY want to be there to celebrate with him this year. Of course, safety first, but if Joshua can safely go home then I will be THRILLED!

All in all Joshua is doing ok. He had increased work of breathing yesterday and required more oxygen overnight. He seems to be ok when he is up playing though.

Quick Update

Not too many changes today. They did another x-ray and it looks much better than yesterday even though I don't feel that he peed as much as he usually does. Strange. The viral FA came back negative so he is out of isolation! I hate that restriction. Dr Law is still leaning towards altitude as our problem. I think that could be why he is better when we get here but it still doesn't explain why he went from good to not good in one weekend. We have been home for the most part of 3 months without an issue. Still working on what it could be. He said next time this happens he is NOT having us drive 10 hours to come here to manage something that I can manage at home......hmmm....I think I said that before we came. :)
He continues to feel well. He would probably be better if he could get a decent nap in. Each time he falls asleep someone needs to come in and wake him up. GGGRRRRR. He keeps getting on his hands and knees in his crib today too. Family Life finally found us a floor mat so when he wakes up we can get down and play and practice this new position.
Sounds like we should be home by the weekend. It sounded sooner then I heard echo on Friday so I would assume that we should be getting ready to go. YIPPEE. I love to see everyone but I miss my kiddo's at home way more.

Shyla, Trevor and Trinity~ I love you as big as the sky and miss you.

Back Among Friends....

We are back at Seattle Children's. Joshua was admitted at 6 am this morning after a long drive in the car. Sunday he was satting around 88 and I put him on oxygen. I couldn't really pin-point any certain thing that was 'wrong' with him. I called Dr Law and we chatted about somethings that I could do and watch for. Monday moring he just wasn't looking good to me, so I called the pediatrician and took him right in. Dr Hardy and Dr Hall did their assessments and we looked at another echo and saw that the amount of fluid in his effusion had just about doubled from Friday to Monday. Dr Law was called and arrangements were made for us to go back out to Seattle.

I decided that driving at night when he was sleeping would be my best bet. Because I was super tired from lack of sleep and my check engine light has come on in the Envoy it was decided that my dad would drive us out. (He should be pulling into home now anytime....)

Joshua did great in the car and when we got here he was looking pretty good. (Go figure. Not that I mind that he looked better but it is REALLY hard to figure out what is wrong when his status changes so fast!) He had an awesome day playing and scooting around his crib. We got to see a lot of friendly faces of friends that we (we more being me) have missed. Joshua had an ultrasound and a repeat x-ray. There is fluid there and it is estimated to be around 120 cc's on the right. (There is about 6 on the left.) This is the same rough estimate that was there back in June. Dr Law has decided that he will be treated medically as opposed to physically. Meaning we will use medication to try and fix it versus tapping him and removing the fluid. The first thought is that we will trick his body by giving his Bumex to him at one time in the morning with the Diurell. The other change is the Sildenafil. We will increase the dose from 0.5ml 3 times a day to 1.6 mls 3 tomes a day. Dr Law says this medication will bring his body from Missoula elevation to sea level! Hopefully this does the trick. Part of the mystery is why on numerous occasions he looks pretty rough in Missoula but perks right up when we get here. (Could be all the attention from the nurses and staff?? He is an attention hound!)

We don't know how long we will be here but I will update and keep you all in the loop as to what is happening....the people that I know that are still following our favorite little Joshua peanut anyway! I hope that you are all doing well and enjoying the beautiful fall weather.

I decided to look back and see where we were a year ago. I didn't log anything for this particular date but I can tell you that we were in the room next door. I did post for the 4th and was reminded of the time I came back from dinner (I believe) to several people surrounding Joshua's bed and blood EVERYWHERE!! They were changing his dressing and his PICC line broke and he was bleeding out from the line. Because he was on Milrinone at that point in his life he got to take a trip back to the unit (CICU) until they did a surgery and repaired the line. Sheesh....that kid.

Here is a picture from 11-4-2008! Boy oh BOY has he grown this year. :)

This was taken while he was playing and exploring his crib. He acted like it was a whole new world! It was very fun to watch.

He was busy trying to get around the crib. He mastered the butt scoot as a way to get aroung backwards. Here is a shot of him deciding maybe he should change positions......Oh mom....you caught me. :)

October's Dr Appointment Update!

We just made it back from Seattle and Joshua is doing GREAT! He is the best he has ever been and it seems that his heart is starting to function better! The news that I was most excited about is we won't have to go to Seattle monthly anymore! We will now go every other month and we get to see Dr Hardy here in Missoula on the opposite month! No more weekly appointments here in Missoula....YIPPEE. I am excited that Joshua has gotten to this point. What a milestone.

Joshua has been doing SO SO good. He has started to butt-scoot across the floor and is picking up new words all the time. It is so fun to watch him grow and learn. He really enjoys picking on his older brother and pulling Trinity's hair! Now I am not one to rush my children when it comes to growing up BUT he can grow out of this stage QUICKLY with no complaints from me! :)

It absolutely amazes me how far he has come in the course of the last several months! What a miracle baby (toddler) he is! We stopped by the ICU when we were in Seattle for clinic. Sadly, we didn't get to see everyone that we would have liked BUT really REALLY enjoyed seeing the ones that we did. They were all pretty surprised on how much he has changed. Dr. Mazor told me that he probably wouldn't even have recognized him....if he wasn't with his mom. I feel like sometime in the last month he just turned into a BIG boy.

Wowsers!

I know that I am really REALLY going to regret not staying up on Joshua's blog for the last few months.

I must say that being home isn't exactly what I had imagined :-( I am still working hard to get my house in order and getting acclimated to being home after being gone for so long. I haven't been using my computer at all so....well....if I don't get on the computer I don't get this updated. BAD LEAH!

I will work harder about making sure to get updates loaded. I SWEAR!

So, our little Joshua is a rock star! Just in case you were having some doubts. ;-) He is still a behind as far as developmental issues go but he is trying really hard. His vocabulary is building and he is starting to get interested in moving and eating. Slowly but surely...he will get there.

He is as cute as ever and if course still a little tricky to figure out. He has been back and forth between Missoula and Seattle every 3 weeks. The only exception to this is this month. He made it the WHOLE 4 weeks from last discharge to his clinic follow up. We will be taking off to Seattle tomorrow and I am planning on just coming back home on Wednesday. Of course, this is MY plan but I am constantly reminded that it is not I who is in control, but the Lord.

Joshua is still battling with the chest effusions. We have started him on oxygen at night to see if maybe that will help. The thought is maybe the elevation of where we are is affecting him. He seems to be tolerating it pretty well.

I WILL update you after the appointment with the latest statistics.

I hope this finds you all well. Thanks for caring.

Leah

Joshua (like my other kiddo's) has really taken a liking to 'Bob Bob' (Spongebob). I was putting him in his PJ's one night and he kept pointing to the orange cowboy hats on them and questionably saying 'Bob Bob'. His brother has Spongebob pajamas so I decided that Joshua needed a pair also. He was SO happy to have them on. He woke up in the middle of the night and pulled his leg all the way up to his face, focused, said 'Bob Bob' and went back to sleep!! I thought it was so cute that he wanted to make sure that he was still in them. I love that he knows what he likes. Reminds me that despite everything....he is in ways, a typical almost 2 year old. ( Can you believe it??)

When we were in Seattle last I decided to get myself a tent camper. I have been looking at them for quite sometime. I was REALLY itching to get it out before the summer was up. At the end of August we took the kids out. We loaded up and headed to Kalispell. We ended up 'camping' out at my Aunt and Uncle's house. They have a little piece of heaven out by the Lost Prairie Airport. We had a blast being able to play at the lake and ride the 4 wheelers while still having the safety net of the house in case we needed it for Joshua. It was super nice to spend sometime up at their house with them. I have missed it so much! Even after 4 days they said we could come back. :) Joshua will need to work on his camping skills. I discovered that he is actually afraid of the dark. I had never thought about it but darkness (complete darkness) is something that he has never really experienced. We were in the camper and after all the lights were off his nighttime chatter started to sound a little distressed to I reached for my little mini flashlight. He pulled it from my hands and shined it straight into his eyes, holding it tight with both hands. So....we slept with the lights on the rest of the trip. He also won't stay under the darn blankets. I am going to have to invest in some blanket sleepers for him I think.

I am so so sorry!

We made it home! It has been incredibly busy around here and I have not had time to get on the computer. I can't believe that I have gone so long without updating! UGH.
Of course, now that I have the time my laptop battery is about dead and I can't find the cord. :( I will get back on soon and post some pictures. I have lots of things that I want to document.
Joshua is doing great. He did have to go back to Seattle but it was only for a week. We are back home now. He is getting so strong and playful. I love having him home!! He now sits all by himself and is slowly building a vocabulary. He says momma, dada, grampa and bye bye. :)
I will post more soon.
Love and blessing to you all!

Friday June 26th

Thirteen months ago we brought Joshua over for a pre-glenn cath. I were expecting to stay 2 weeks, 4 at the most. I had no idea the path that our lives were going to go when we made that trip.
This last year has really been something else! I have developed relationships and made friends that I hope last the rest of our lives. I have been shaped as a person by the people that have touched my life this last year. I don't know how to thank all of the people that reached out to me and our family and supported us through the trials that we endured. I don't know how to thank the doctors, nurses and staff that took care of Joshua and even more importantly truly cared for him. I don't know how to thank all of you that follow Joshua and our family and offer your prayers and support. I feel completely blessed! Please know that I THANK YOU from the bottom of my heart and pray that you lives will be enriched like you have enriched ours.
This year has also brought immense heartache. I have shed more tears than a person should in a life time. I have never been so scared that I would have to say goodbye to one of my children before I even really knew them. I have seen more parents and families leave the hospital with empty arms and broken hearts than I can even fathom.
I felt completely and totally blessed when Joshua was discharged and got to leave the hospital with my baby. There were days that I didn't think that would become a reality. Today I feel overwhelmed with joy as I get to tell you all that not only did I get to take my child and leave the hospital, I get to take my child and leave Seattle! Yes friends, we get to go HOME! HOME TO MONTANA! I am so excited to take him to the home that I know he doesn't remember but the place that he has always belonged, share him with family and dear friends who have met him but a time or two and introduce my miracle baby to the ones that he has never met. I am so grateful that this has become a reality! But I also admit that this is bittersweet. By going home I am leaving behind people that really mean a lot to me. I hope that we can continue to be friends even though there is distance between us. My hope is that Joshua will grow up and know that he had 2 families that loved him. The one that he was born into and the one that embraced him with open arms and showed him love when the other family had to be so far away.

We will be taking off for Montana (HOME) this weekend. I want to say that I am sorry that we are ducking out without saying goodbye to those of you here in Seattle. Please do not take this personally. I really REALLY want to but Joshua has been sick and I don't want to be spreading bugs! We will be back for appointments on the 22nd of July. We will be coming to Seattle for a whole week and will make our 'goodbye' rounds then.

I will continue to update the blog with Joshua's progress and the craziness that is our life!
Blessing and love to each of you!